MyCILhttps://www.mycil.org
Fri, 17 May 2019 19:52:17 +0000en-US
hourly
1 163062628New Research Suggests Autism Screenings Should Start Earlierhttps://www.mycil.org/new-research-suggests-autism-screenings-should-start-earlier/
Fri, 17 May 2019 19:52:17 +0000https://www.mycil.org/blog/?p=862A new research study reveals autism diagnosis can be made shortly after a child’s first birthday — months before the routine pediatrician screening. The study of more than 1,200 kids published in the journal JAMA Pediatrics showed better outcomes when autism is diagnosed earlier and treatments can begin sooner.

An ASD diagnosis
tends to remain when diagnosed at 14 – 16 months. In fact, 79% of the kids
diagnosed at 14 months retained the autism label as did 83% of those diagnosed
at 16 months. On the other hand, only
50% of kids diagnosed at 12 – 13 months still had the diagnosis at their re-evaluation
a few years later.

While the American
Academy of Pediatrics recommends autism screenings for all children at 18 and
24 months, a screening at 12 to 13 months could offer intervention sooner for
better outcomes.

]]>862Illinois’ The Lark Is Presenting an Oedipus Adaptation Featuring a Character With a Disability Written by a Disabled Playwright ﻿https://www.mycil.org/illinois-the-lark-is-presenting-an-oedipus-adaptation-featuring-a-character-with-a-disability-written-by-a-disabled-playwright-%ef%bb%bf/
Thu, 16 May 2019 19:29:36 +0000https://www.mycil.org/blog/?p=856Tim J. Lord’s On
Every Link a Heart Does Dangle; or Owed is having a limited run until May 19 at The Lark. The recipient of the
Apothetae & Lark Playwriting Fellowship — the first national award
supporting a disabled playwright — Lord reimagined Oedipus with a disability at
its center.

Lord shifted the focus of the play from the king to a young woman who is poor and has suffered from discrimination due to her disability. He uses the classic myths of history to upend common disability myths in this play.

]]>3229Washington State Senate Takes Another Look at the “Block the Box” Billhttps://www.mycil.org/washington-state-senate-takes-another-look-at-the-block-the-box-bill/
Wed, 15 May 2019 19:19:17 +0000https://www.mycil.org/blog/?p=852The “Block the Box” bill would allow the City of Seattle to use cameras to identify drivers who block intersections. This bill is especially important for people with disabilities.

For example, people with visual impairments who cannot drive
often navigate the city on foot. When drivers stop in the box, they block the
crosswalks, forcing them into unsafe areas to cross roads. This puts people’s
lives at risk.

This bill comes from an increase of problems at the city’s
busiest intersections. Drivers trying to fill a lane end up blocking an
intersection or filling bus-only lanes. In one intersection alone — Fourth and
Battery — there were almost 200 blocking instances in an eight-hour period.

Tickets After First Warnings

The
proposed bill gives drivers a grace period. After January 2020, however,
drivers who block the box can receive a ticket after a first warning. After
Jan. 1, 2022, the city of Seattle must provide a report to the Legislature
outlining the success of the bill.

]]>852Take Action Tuesday for 5/14/19https://www.mycil.org/take-action-tuesday-for-5-14-19/
Tue, 14 May 2019 19:32:46 +0000https://www.mycil.org/blog/?p=849Take
Action Tuesday posts feature ways you can help improve the lives of people with
disabilities — in your community and around the world.

From
signing your name to a petition to emailing your local representative to share
your stance on proposed legislature, many of these acts don’t take long but can
make a real difference.

Discover
what you can do on the national and state levels to improve the lives of people
with disabilities.

Make a
Difference Across the United States

Register Today: 2019 National Home and Community Based
Services (HCBS) Conference in Baltimore, MD on Aug. 26­–29

Mark your calendar and register today for the 2019 National HCBS
Conference hosted by the National Association of States United for Aging and
Disabilities (NASUAD). The conference brings together policymakers, HCBS
program managers and administrators, and stakeholders. It’s a chance to connect
with others and learn the latest.

Attend
Webinar: Plan for the Future With The Arc’s New Resources Webinar on May
21, 2019

The Arc is
hosting a webinar to provide information and resources about future planning
for people with intellectual and developmental disabilities (I/DD). During the
webinar attendees will learn more about the new resources The Arc developed to
help families plan for the future.

Register Today: Older Adult Mental Health Awareness Day on May
20

Join the Substance
Abuse and Mental Health Services Administration, the Administration for
Community Living and the National Coalition on Mental Health and Aging for the
National Older Adult Mental Health Awareness Day. You can attend the event in
person or via webcast.

Contact Your Members of Congress: Ask Your Members of
Congress to Support the Marriage Access for Persons With Special Abilities Act
(H.R. 1529)

This bipartisan bill clarifies
that SSI benefits for a person with an intellectual or developmental disability
won’t be affected by marital status. It ensures people continue receiving the
benefits they need after they get married.

Contact Your Members of Congress: Ask Your Members of
Congress to Support the Transformation to Competitive Employment Act (H.R. 873/
S. 260)

This bipartisan bill will expand
the supports that provide competitive, integrated employment for people with
disabilities. It also will phase out the Special Wage Certificates (SWCs) that
cap income for people with disabilities.

Give Your Input: Tell Us About Your Voting Experiences

Have you experienced a barrier
when you voted in previous elections? NCIL would like to hear from you! They’re
working with the
Washington Lawyers’ Committee for Civil Rights and Urban Affairs to learn more
about the challenges people with disabilities face when they vote.

Participate in a Survey: Job Retention & Career Advancement

The
National Research and Training Center on Blindness and Low Vision wants to hear
about your successes and challenges with employment. Whether you had success or
difficulty finding and keeping a job, your participation in the survey will
help better understand job retention and career advancement.

Attend
the 26th Annual Mid-Atlantic ADA Update Conference on Nov. 14–15, 2019 to get
up-to-date information on ADA guidelines and regulations. You’ll also learn the
best practices for implementing the law and network with other professionals.

Register Today: The New York City Buddy
Walk® in Central Park on Sept. 14, 2019

Join people with Down syndrome,
their family and friends, politicians and more to promote acceptance and
inclusion for people with Down syndrome. All the funds raised will go towards
the National Down Syndrome Society’s programming.

Call your Members of Congress: Thank
Them for Passing the Money Follows the Person Extension and Ask Them to
Co-sponsor and Support the EMPOWER Care Act

Thanks to the hard work of
advocates like you, Congress passed the Money Follows the Person Extension
(H.R. 1839). Call your members of Congress to thank them and ask them to
co-sponsor and support the EMPOWER Care Act. The EMPOWER Care Act is a
longer-term reauthorization of the Money Follows the Person.

I am calling to thank you for
adding funding for the Money Follow the Person (MFP) program in H.R. 1839 and
to ask you to support a longer-term reauthorization in the EMPOWER Care
Act.

MFP has enabled over 88,000
older adults and people with disabilities living in institutions to transition
back to their communities. MFP is fiscally responsible: it has improved
the quality of life for thousands of individuals while saving states
money.

I am asking [Member of
Congress’ Name] to co-sponsor and vote yes on the EMPOWER Care Act.

Register today for the National
Older Adult Mental Health Awareness Day 2019 On Monday, May 20, 1–3:30 p.m. in
the Great Hall of the Hubert H. Humphrey Building in Washington, D.C. The event
will raise awareness of older adults’ mental health needs, promote
evidence-based supports, highlight where to seek services and more.

Mark Your
Calendar: National Council on Disability Meeting on July 15–16, 2019 in Chicago,
IL

The
National Council on Disability is holding a council meeting on July 15–16 in
Chicago, Illinois. During the meeting, which is open to the public, the Council
will discuss agency priorities, policy trends and other agency business.

Mark Your
Calendar: 2019 Annual Conference on Independent Living on July 22–25, 2019 in
Washington, D.C.

The
National Council on Independent Living’s annual conference is July 22–25 at the
Grand Hyatt in Washington, D.C. The conference will include legislative and
advocacy updates, workshops and exhibits.

Contact Your
Representatives: Ask They Join Representatives Rice and Walden in Support of
the Homeless Veterans’ Reintegration Program

The
Homeless Veterans’ Reintegration Program (HVRP) helps homeless and at-risk
veterans find employment and housing through skills training. Representatives
Kathleen Rice of New York and Greg Walden of Oregon are working to get funding
support in the U.S. House of Representatives for the 2020 fiscal year.

The National Down Syndrome
Society (NDSS) is hosting its 15th annual CARING with Congress event
on July 10, 5:30–7:30 p.m. During the event, supporters, Senators and members
of Congress come together to raise money for the NDSS Research Innovation &
Discovery Fund.

Participate in a Survey: Workplace Tech
for People With Intellectual and Developmental Disabilities by June 30, 2019

Do you work and have an
intellectual or developmental disability? Does your loved one? Are you a job
coach or other rehabilitation service provider for people with disabilities? Do
you employ people with disabilities? If you answered yes to any of these, Georgia
State University’s Center for Leadership in Disability (CLD) needs your help.

Participate in a quick online
survey to inform the CLD about whether workplace technology helps people with
I/DD succeed at work, how wireless technology can be used in the workplace and
the barriers to using these technology resources in the workplace.

Participate in a Survey: Oral and
General Health of Kids and Young Adults With Down Syndrome

Do you have a child (newborn to 21 years) with Down syndrome? Help researchers at New York University better understand the oral and general health of young people with Down syndrome. The anonymous online survey only takes 5 to 10 minutes to complete. Learn more and take the survey!

Register Today:
Milestones National Autism Conference on June 11–12 in Cleveland

The National Autism Conference on June 11–12 at the Cleveland I-X Center will detail practical strategies for all. Keynote speakers, workshops, exhibitors and more provide invaluable resources and information for people with autism, their families and support professionals. Learn more about the conference and register today!

Contact Your
Members of Congress: Urge Them to Co-Sponsor the Disability Integration Act
(DIA)

The
DIA, a bipartisan bill, ensures people with disabilities have the right to live
in and receive services in their own homes. It prevents people from being
forced to live in institutions. In short, this act is designed to ensure the
full integration of people with disabilities into communities.

Contact Your
Legislators: Ask Them to Support the Surviving Widow(er) Income Fair Treatment
(SWIFT) Act of 2019

The SWIFT Act would expand the social security benefits for widow(er)s and surviving divorced spouses. It would also fix outdated and arbitrary claiming restrictions, allowing for more flexibility when claiming benefits. Contact your legislators and ask they support this bill.

Participate
in a Paid Research Study: Universal Design Practices to Enhance Work Outcomes

The Center for Assistive
Technology and Environmental Access is looking for employed people with
disabilities for their research study about work environments. Specifically,
they want to know how the way you get around the office or take part in
meetings affects your sense of team inclusion. Based on their findings, they’ll
compile actions employers can take to make workplaces more inclusive.

Give Your
Input: What Issues Should the Administration for Community Living (ACL)
Prioritize Relating to Elder Abuse, Neglect and Exploitation

The ACL is working on determining the focus of the Elder Justice Coordinating Council — and they need your input! What issues do you think relating to elder abuse, neglect and exploitation should the council prioritize? Your input will help them make an informed decision on their activities over the next two years. Learn more about the input they are requesting.

Submitting your thoughts and ideas is easy. Just send an email to ejcc@acl.hhs.gov with the subject line “Thoughts and Ideas.” Input is due by Sept. 30, 2019.

Sign the
Petition: Help Stop Any Funding Cuts or Caps to Medicaid

Join Easterseals as they work to prevent any funding cuts or caps to Medicaid. Submit the Easterseals form to add your name to the petition.

By submitting the form, you’re
telling Congress that health services are crucial to people with disabilities
and their loved ones. You’re joining the fight to stop Medicaid cuts and caps
that prevent people with disabilities from getting the Home and Community Based
Services they need to live their best, independent lives.

Participate
in the Survey: For Seniors With Disabilities

If you’re a senior with a
disability, The Americans with Disabilities Act (ADA) National
Network wants to hear from you.

The ADA National Network is
trying to learn how people like you get your information about services you can
receive and your rights under the Americans with Disabilities Act — and how you
use that information.

Take the survey and help the ADA National Network improve their future outreach initiatives to better support seniors with understanding their rights and available services.

Sign the
Petition: Urge the Senate to Support the Convention on the Rights of Persons
with Disabilities

The Convention on the Rights of
Persons with Disabilities (CRPD) is an international treaty based on The
Americans with Disabilities Act (ADA). It promotes the rights and protections
of people with disabilities around the world.

There are 173 ratifications
around the globe for this convention. Unfortunately, the United States has
failed to ratify it by five votes. Since the failed voting, it has not come to
a floor vote.

Submit the form to sign your name to the petition. The petition will be delivered in person to the offices of Senators in Washington, D.C.

Share Your
Story: Help Prevent Medicaid Cuts by Submitting Your Story Online About Why
Receiving Home and Community Based Services Is Important

The Arc is gathering stories
from people like you about why Home and Community Based Services are important.
They’re using these stories to advocate for continued funding of the Medicaid
program.

Illinois

Submit a Form: Help
Create a Sustainable Intellectual and Developmental Disabilities (ID/DD)
Support System for Illinois by Using the Form to Email Your Legislators

Reach out to your Illinois
legislators asking them to increase the funding for a sustainable ID/DD support
system. This funding would improve the quality of services provided as well as
decrease the number of people on the waiting list to receive the services.

Use this form to send a pre-written message to Illinois legislators that tell them you support increased funding for a sustainable ID/DD support system.

Oklahoma

Contact Your
Legislators: Ask Legislators to Fund Home and Community Based Services

Oklahoma needs to continue
funding the Home and Community Based Services people are receiving. Moreover,
funding should cover those on a waiting list. In 2018, the number waiting to
receive community-based services has grown to over 7,600.

Pennsylvania

Join the Easterseals at Kennywood Park in Pittsburgh on May 18 for a one-mile walk for the whole family. The event raises funds and awareness for disabilities. Learn more about the Walk With Me event.

Sign the
Petition: Add Your Name to Show Your Support of Funding for Pennsylvanians With
Autism and Intellectual Disabilities

There is a shortage of direct
support professionals. This shortage is leading to a long waiting list for
people with autism or intellectual disabilities who want services that will
help them live and work in their communities.

Washington State

Apply Today: High School Students With
Disabilities Are Invited to Apply for the 19th annual Youth Leadership Forum

Washington
state high school students with disabilities are invited to learn leadership,
citizenship and personal skills at the 19th annual Youth Leadership Forum. The
Governor’s Committee on Disability Issues and Employment is accepting
applications through May 30.

Email Your Legislators: Ask Them to Prevent Discrimination Against
People With Disabilities in Organ Transplants

Contact your legislator to tell them you support SB 5405. This bill ensures people with Down syndrome and other disabilities on transplant lists receive equal consideration. Sending your support is easy with the pre-filled email form!

]]>3228719 Lacrosse Bringing the Sport to Colorado Players of All Abilitieshttps://www.mycil.org/719-lacrosse-bringing-the-sport-to-colorado-players-of-all-abilities/
Mon, 13 May 2019 19:29:05 +0000https://www.mycil.org/blog/?p=840Colorado kids and
adults with physical or cognitive disabilities now have the opportunity to
learn how to play lacrosse. Thanks to 719 Lacrosse, more people are being
introduced to the sport.

The non-profit organization holds adaptive clinics for players of all ages and abilities. They also offer lacrosse instruction to students with disabilities in area schools.

Opening the Game to
Everyone Who Wants to Play

719 Lacrosse was
founded by Rob Raphael, an IT professional in Colorado Springs. Devoting his
free time to lacrosse, he saw the need for a program like this after coaching
his son’s U15 team.

A player with
cerebral palsy joined the team, marking the first time he had the opportunity
to play an organized sport. In fact, he scored the final goal of the season!

After coaching this
team, Raphael realized he could do more to include players with disabilities.

Partnership Creates an
Adaptive Community

Raphael, who doesn’t
have much experience in working with the disability community, realized he
needed partners to make his vision work. He worked on connecting with special
needs coordinators, volunteers, supporters and service providers — all in his
limited free time.

The community
rallied behind his passion. Colorado College offered its fields and gym space
for the lacrosse clinics. Rolling Mammoth wheelchair team members volunteered. Warrior
Sports donated the gear. Finally, US Lacrosse gave a National Diversity Grant
to support disability access.

More Than Just Lacrosse
Skills

719 Lacrosse offers
players more than just lacrosse skills. By being part of this organized sport,
participants build their social and teamwork skills. They also improve their
self-confidence.

After a six-week
instructional course, players received a medal. One player was so proud of his
accomplishment that he didn’t take the medal off for a week.

]]>3227Check Out Dwayne “The Rock” Johnson New Short Film About His Powerlifting Inspiration With Down Syndromehttps://www.mycil.org/check-out-dwayne-the-rock-johnson-new-short-film-about-his-powerlifting-inspiration-with-down-syndrome/
Fri, 10 May 2019 18:44:44 +0000https://www.mycil.org/blog/?p=836Dwayne “The Rock”
Johnson is honoring his powerlifting inspiration in a new short film by ESPN.
Part of the “Special Olympics: 50 Game Changers,” the film shows the bond
between Dwyane Johnson and his hero and lifelong friend Milton McBride Rosen.

The six-minute film
tells the story of how McBride Rosen was adopted by twin brothers and co-owners
of the Boddy Shoppe Gym. It was there that Johnson and his father met and were
inspired by McBride Rosen.

]]>836Greta Thunberg — Teen Activist With Autism — Nominated for Nobel Peace Prizehttps://www.mycil.org/greta-thunberg-teen-activist-with-autism-nominated-for-nobel-peace-prize/
Thu, 09 May 2019 17:00:22 +0000https://www.mycil.org/blog/?p=829Greta Thunberg, a
teen activist with autism, has been nominated for a Nobel Peace Prize. Thanks
to her climate activism, she has started a mass movement.

Protesting in Sweden to
Leading a Student Walk-out in 112 Countries

In August 2018, Thunberg
gained attention in her home country of Sweden after protesting for three weeks
outside of parliament. She wanted to phase out coal sooner than the 2038
recommendation parliament made.

She didn’t stop
there. Her work in climate activism led to the student walk-out in mid-March
across 112 countries.

Her Neurodiversity a
Benefit to Her Work

Thunberg credits her autism for her activist work. Common to
others on the autism spectrum, she has a special interest. Her interest is
climate change. The other benefit of her autism is the ability to concentrate
on a single topic for hours.

After learning about climate change when she was 9, she
studied it intently. It led to her family adopting environmentally friendly
practices, such as growing their food, solar power for their home and bike
riding as primary transportation.

]]>829From House Calls to Training Incentives … Tackling the Dental Care Challenges People With Autism and Developmental Disabilities Facehttps://www.mycil.org/from-house-calls-to-training-incentives-tackling-the-dental-care-challenges-people-with-autism-and-developmental-disabilities-face/
Wed, 08 May 2019 19:01:42 +0000https://www.mycil.org/blog/?p=822Finding dental care for people with autism and other developmental disabilities is extremely difficult. The result of this challenge is startling: In one 2012 study, 32% of the 4,700 patients studied had untreated cavities and 80% suffered from serious gum infections.

In short, people with developmental disorders suffer from
dental disease more often than the general population. They are not getting the
care they need to prevent and treat dental issues.

Why People With Autism and Developmental Disabilities
Aren’t Getting the Dental Care They Need

There are many reasons why people with autism and
developmental disabilities aren’t getting the dental care they need for oral
health.

Firstly, many kids on the autism spectrum or who have a
developmental disability need general anesthesia for dental work. The issue is
many dentists don’t offer it.

Secondly, insurance typically doesn’t cover anesthesia for
certain dental work like root canals. This means must-have dental procedures
could have families paying thousands of dollars out of pocket — if they can
even afford it.

Thirdly, many dentists aren’t trained or don’t feel
comfortable treating people with autism, developmental disorders, cerebral
palsy or other disabilities. Because of this lack of experience and training,
many dentists avoid treating patients with disabilities.

Finally, many people with developmental disabilities aren’t
capable of maintaining their dental hygiene. They require extra dentist visits
or certain accommodations that dentists aren’t able to or willing to provide.

How States Are Trying to Improve Access to Dental Care

States have recognized the challenge and issues. As a
result, lawmakers are trying to make changes.

For instance, in California they have increased funding for
Denti-Cal, the state’s dental insurance for patients with disabilities. With a
$600 million increase in funding, the program will have more money to help pay
for the additional time and resources patients with disabilities need,
including anesthesia.

Another example is New Mexico’s incentive for dentists to
treat patients with disabilities. They have a Medicaid billing code that
dentists can use to earn an extra $90 when seeing a patient with special needs.
To be eligible for this code, the dentist must complete special training.

How the Private Sector Is Addressing the Need for
Dental Care

In addition to state government, the private sector is also
working to improve dental care access for patients with special needs.

New York University’s College of Dentistry now has a center
open that only serves people with disabilities. One Southern California dentist
even started a mobile dental office, making house calls to patients with
special needs. In this more comfortable setting, they often can receive basic
dental care without the need for anesthesia.

]]>822Take Action Tuesday for 5/7/19https://www.mycil.org/take-action-tuesday-for-5-7-19/
Tue, 07 May 2019 19:48:33 +0000https://www.mycil.org/blog/?p=820Take
Action Tuesday posts feature ways you can help improve the lives of people with
disabilities — in your community and around the world.

From
signing your name to a petition to emailing your local representative to share
your stance on proposed legislature, many of these acts don’t take long but can
make a real difference.

Discover
what you can do on the national and state levels to improve the lives of people
with disabilities.

Make a
Difference Across the United States

Contact Your Members
of Congress: Ask Your Members of Congress to Support the Marriage Access for
Persons With Special Abilities Act (H.R. 1529)

This bipartisan bill clarifies that SSI benefits for a
person with an intellectual or developmental disability won’t be affected by
marital status. It ensures people continue receiving the benefits they need
after they get married.

Contact Your Members
of Congress: Ask Your Members of Congress to Support the Transformation to
Competitive Employment Act (H.R. 873/ S. 260)

This bipartisan bill will expand the supports that provide
competitive, integrated employment for people with disabilities. It also will
phase out the Special Wage Certificates (SWCs) that cap income for people with
disabilities.

Give Your Input: Tell
Us About Your Voting Experiences

Have you experienced a barrier when you voted in previous
elections? NCIL would like to hear from you! They’re working with the Washington Lawyers’ Committee for Civil Rights and Urban
Affairs to learn more about the challenges people with disabilities face when
they vote.

Participate in a Survey: Job Retention & Career Advancement

The
National Research and Training Center on Blindness and Low Vision wants to hear
about your successes and challenges with employment. Whether you had success or
difficulty finding and keeping a job, your participation in the survey will
help better understand job retention and career advancement.

Attend
the 26th Annual Mid-Atlantic ADA Update Conference on Nov. 14–15, 2019 to get
up-to-date information on ADA guidelines and regulations. You’ll also learn the
best practices for implementing the law and network with other professionals.

Register Today: The New York City Buddy
Walk® in Central Park on Sept. 14, 2019

Join people with Down syndrome,
their family and friends, politicians and more to promote acceptance and
inclusion for people with Down syndrome. All the funds raised will go towards
the National Down Syndrome Society’s programming.

Call your Members of Congress: Thank
Them for Passing the Money Follows the Person Extension and Ask Them to
Co-sponsor and Support the EMPOWER Care Act

Thanks to the hard work of
advocates like you, Congress passed the Money Follows the Person Extension
(H.R. 1839). Call your members of Congress to thank them and ask them to
co-sponsor and support the EMPOWER Care Act. The EMPOWER Care Act is a longer-term
reauthorization of the Money Follows the Person.

I am calling to thank you for
adding funding for the Money Follow the Person (MFP) program in H.R. 1839 and
to ask you to support a longer-term reauthorization in the EMPOWER Care
Act.

MFP has enabled over 88,000
older adults and people with disabilities living in institutions to transition
back to their communities. MFP is fiscally responsible: it has improved
the quality of life for thousands of individuals while saving states
money.

I am asking [Member of
Congress’ Name] to co-sponsor and vote yes on the EMPOWER
Care Act.

Register
today for the National Older Adult Mental Health Awareness Day 2019 On Monday,
May 20, 1–3:30 p.m. in the Great Hall of the Hubert H. Humphrey Building in
Washington, D.C. The event will raise awareness of older adults’ mental health
needs, promote evidence-based supports, highlight where to seek services and
more.

Mark Your Calendar: National Council on Disability Meeting on July 15–16,
2019 in Chicago, IL

The National Council on Disability is holding a
council meeting on July 15–16 in Chicago, Illinois. During the meeting, which
is open to the public, the Council will discuss agency priorities, policy
trends and other agency business.

Mark Your Calendar: 2019 Annual Conference on Independent Living on
July 22–25, 2019 in Washington, D.C.

The National Council on Independent Living’s annual
conference is July 22–25 at the Grand Hyatt in Washington, D.C. The conference
will include legislative and advocacy updates, workshops and exhibits.

Contact Your Representatives: Ask They Join Representatives Rice and
Walden in Support of the Homeless Veterans’ Reintegration Program

The Homeless Veterans’ Reintegration Program (HVRP)
helps homeless and at-risk veterans find employment and housing through skills
training. Representatives Kathleen Rice of New York and Greg Walden of Oregon
are working to get funding support in the U.S. House of Representatives for the
2020 fiscal year.

The
National Down Syndrome Society (NDSS) is hosting its 15th annual
CARING with Congress event on July 10, 5:30–7:30 p.m. During the event,
supporters, Senators and members of Congress come together to raise money for
the NDSS Research Innovation & Discovery Fund.

Participate in a Survey: Workplace Tech
for People With Intellectual and Developmental Disabilities by June 30, 2019

Do you work and have an
intellectual or developmental disability? Does your loved one? Are you a job
coach or other rehabilitation service provider for people with disabilities? Do
you employ people with disabilities? If you answered yes to any of these,
Georgia State University’s Center for Leadership in Disability (CLD) needs your
help.

Participate in a quick online
survey to inform the CLD about whether workplace technology helps people with
I/DD succeed at work, how wireless technology can be used in the workplace and
the barriers to using these technology resources in the workplace.

Participate in a Survey: Oral and
General Health of Kids and Young Adults With Down Syndrome

Do you have a child (newborn to 21 years) with Down syndrome? Help researchers at New York University better understand the oral and general health of young people with Down syndrome. The anonymous online survey only takes 5 to 10 minutes to complete. Learn more and take the survey!

Register Today: Milestones National Autism Conference on June 11–12 in
Cleveland

The National Autism Conference on June 11–12 at the Cleveland I-X Center will detail practical strategies for all. Keynote speakers, workshops, exhibitors and more provide invaluable resources and information for people with autism, their families and support professionals. Learn more about the conference and register today!

Contact Your Members of Congress: Urge Them to Co-Sponsor the
Disability Integration Act (DIA)

The DIA, a bipartisan bill, ensures people with
disabilities have the right to live in and receive services in their own homes.
It prevents people from being forced to live in institutions. In short, this
act is designed to ensure the full integration of people with disabilities into
communities.

Contact Your
Legislators: Ask Them to Support the Surviving Widow(er) Income Fair Treatment
(SWIFT) Act of 2019

The SWIFT Act would expand the social security benefits for widow(er)s and surviving divorced spouses. It would also fix outdated and arbitrary claiming restrictions, allowing for more flexibility when claiming benefits. Contact your legislators and ask they support this bill.

Participate
in a Paid Research Study: Universal Design Practices to Enhance Work Outcomes

The Center for Assistive
Technology and Environmental Access is looking for employed people with
disabilities for their research study about work environments. Specifically,
they want to know how the way you get around the office or take part in
meetings affects your sense of team inclusion. Based on their findings, they’ll
compile actions employers can take to make workplaces more inclusive.

Give Your
Input: What Issues Should the Administration for Community Living (ACL)
Prioritize Relating to Elder Abuse, Neglect and Exploitation

The ACL is working on determining the focus of the Elder Justice Coordinating Council — and they need your input! What issues do you think relating to elder abuse, neglect and exploitation should the council prioritize? Your input will help them make an informed decision on their activities over the next two years. Learn more about the input they are requesting.

Submitting your thoughts and
ideas is easy. Just send an email to ejcc@acl.hhs.gov with the subject line “Thoughts and Ideas.” Input
is due by Sept. 30, 2019.

Sign the
Petition: Help Stop Any Funding Cuts or Caps to Medicaid

Join Easterseals as they work to prevent any funding cuts or caps to Medicaid. Submit the Easterseals form to add your name to the petition.

By submitting the form, you’re
telling Congress that health services are crucial to people with disabilities
and their loved ones. You’re joining the fight to stop Medicaid cuts and caps
that prevent people with disabilities from getting the Home and Community Based
Services they need to live their best, independent lives.

Participate
in the Survey: For Seniors With Disabilities

If you’re a senior with a
disability, The Americans with Disabilities Act (ADA) National
Network wants to hear from you.

The ADA National Network is
trying to learn how people like you get your information about services you can
receive and your rights under the Americans with Disabilities Act — and how you
use that information.

Take the survey and help the ADA National Network improve their future outreach initiatives to better support seniors with understanding their rights and available services.

Sign the
Petition: Urge the Senate to Support the Convention on the Rights of Persons
with Disabilities

The Convention on the Rights of
Persons with Disabilities (CRPD) is an international treaty based on The
Americans with Disabilities Act (ADA). It promotes the rights and protections
of people with disabilities around the world.

There are 173 ratifications
around the globe for this convention. Unfortunately, the United States has
failed to ratify it by five votes. Since the failed voting, it has not come to
a floor vote.

Submit the form to sign your name to the petition. The petition will be delivered in person to the offices of Senators in Washington, D.C.

Share Your
Story: Help Prevent Medicaid Cuts by Submitting Your Story Online About Why
Receiving Home and Community Based Services Is Important

The Arc is gathering stories
from people like you about why Home and Community Based Services are important.
They’re using these stories to advocate for continued funding of the Medicaid
program.

Illinois

Submit a Form: Help
Create a Sustainable Intellectual and Developmental Disabilities (ID/DD)
Support System for Illinois by Using the Form to Email Your Legislators

Reach out to your Illinois
legislators asking them to increase the funding for a sustainable ID/DD support
system. This funding would improve the quality of services provided as well as
decrease the number of people on the waiting list to receive the services.

Use this form to send a pre-written message to Illinois legislators that tell them you support increased funding for a sustainable ID/DD support system.

Oklahoma

Contact Your
Legislators: Ask Legislators to Fund Home and Community Based Services

Oklahoma needs to continue
funding the Home and Community Based Services people are receiving. Moreover,
funding should cover those on a waiting list. In 2018, the number waiting to
receive community-based services has grown to over 7,600.

Pennsylvania

Join the Easterseals at Kennywood Park in Pittsburgh on May 18 for a one-mile walk for the whole family. The event raises funds and awareness for disabilities. Learn more about the Walk With Me event.

Sign the
Petition: Add Your Name to Show Your Support of Funding for Pennsylvanians With
Autism and Intellectual Disabilities

There is a shortage of direct
support professionals. This shortage is leading to a long waiting list for
people with autism or intellectual disabilities who want services that will
help them live and work in their communities.

Washington State

Email Your Legislators: Ask Them to Prevent Discrimination Against
People With Disabilities in Organ Transplants

Contact your legislator to tell them you support SB 5405. This bill ensures people with Down syndrome and other disabilities on transplant lists receive equal consideration. Sending your support is easy with the pre-filled email form!

]]>3226Funding for Respite Care May Be Increasinghttps://www.mycil.org/funding-for-respite-care-may-be-increasing/
Mon, 06 May 2019 19:35:53 +0000https://www.mycil.org/blog/?p=816One of the key ways to prevent caregiver burnout is by taking breaks. Federal lawmakers are trying to make this easier by increasing funding for respite care.

The Lifespan Respite Care Reauthorization Act of 2019

The bipartisan bill to expand federal funding of respite
care was introduced in April. Over the next five years, $200 million would go
to respite care services across the nation.

Not only would this bill reauthorize the existing law from
2006, it would also add a substantial investment. The investment would equate
to $20 million for the 2020 fiscal year, then increase each year by $10
million, resulting in $60 million for fiscal year 2024.

Compared to the $2.5 million that Congress allocated each
year since 2009, this is a significant increase.

Reducing Financial Strain on Families and the U.S.
Healthcare System

According to U.S. Rep. Jim Langevin, D-R.I. who introduced
the House of Representatives version of the bill, this funding would help
reduce the financial strain that families face.

In addition, when caregivers get the respite care they need
— one of the most frequently requested services — they experience better
physical health as well. The stress of caregiving can manifest into physical
illness, one reason why respite care is crucial.